Posts made in January, 2013

Two amazing kids who proved everyone wrong

Posted on Jan 20, 2013 | 1 comment

Two amazing kids who proved everyone wrong

May sledding yesterday was partially inspired by these two boys who I wrote about today on the BabyCenter Blog. Being the kind of sappy, sentimental type, their story – orginally written about on this Sport Illustrated Kids Blog – had me blubbering like a baby. Here’s my take on their story: Connor Long refused to believe his younger brother, Cayden, couldn’t compete in sports with him. That Cayden can not walk or talk was not a deterrent in Connor’s eyes. Why should it be? The two boys were named 2012 SportsKids of the Year by Sports Illustrated Kids because of Connor’s determination to include his brother, and his brother’s complete enthusiasm to join in. They had a simple vision: to race together. The other children on the list read like a Who’s Who of ambitious young children – top of their sports nationally, National Honors students and volunteers to boot. They sound incredible. Connor and Cayden compete in triathlons and fun runs – 14 to date – on a local level. They don’t have a stack of medals to their names. Glorifying sports heroes only goes so far. Kudos to Sports Illustrated Kids for naming – not a top athlete – but two everyday kids to their highest honor. And, for naming both boys, proving that it really is the taking part that matters. As Sports Illustrated Kids explain, “For [Connor], these races are just a chance for him and his little brother to have some fun.” Yesterday, we took my kids out to a local park, blanketed with snow. My toddler, Ieuan, had never tried sledding. He went down the hill once, then a second time – a smile the size of the hill behind him on his face. “Let’s try May,” I said, gesturing to my disabled daughter – who like Cayden can not walk or talk – and was wrapped up in blankets, stuck in her stroller. Admittedly, it hadn’t occurred to me until that moment that maybe she woud enjoy the rush of the wind on her cheeks and the rough vibration of the snow beneath her. I trudged up the hill with her and, assisted by a friend, climbed in behind her. “Whoooo!” I cried and we ripped down the hill. May’s mouth fell open and a flood of laughter poured out. Here she is a second time, racing down with her daddy. And a big thank you, to Connor and Cayden, for reminding me that May is mighty happy to be taking part. The full post with video appears on the BabyCenter Blog. (My original post with video on Mama Lewis is here in the previous...

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It doesn’t get much better than this… (VIDEO)

Posted on Jan 19, 2013 | 1 comment

It doesn’t get much better than this… (VIDEO)

It is the first snow of the season in London. And, snow does crazy things to people. We stole our downstairs neighbors’ sled out of the storage cupboard. Yes, we are criminals. But, we did it for May – so I don’t think anyone will arrest us. Also, we put it back and we live in the same house as them, so we are probably the worst criminals ever. Honestly, May sledding was an afterthought. We went out in the snow today to take Ieuan (1.5 years old) and his girlfriend (1.5 years old too) sledding for the first time (later in the day, she gave him his first kiss and he enjoyed it so much he started kissing everyone). When I suggested we try May on the hill, I wasn’t sure she’d enjoy it at all. I only took her halfway up. Of course, she loved it. She would have stayed all day but her pathetic parents retreated to a nearby pub. This is her second run down the hill. Who is enjoying themselves more: May or her daddy?...

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What should I ask the hospital regarding May’s surgery?

Posted on Jan 13, 2013 | 16 comments

What should I ask the hospital regarding May’s surgery?

Tomorrow, I have a hospital preparation appointment to establish that May is well enough to go on the waiting list for hip surgery. At the meeting, I can ask questions and – since I was blindsided at the last meeting – I now have about 1,000 questions I want to ask, ranging from How will May survive the surgery? all the way to How will I survive a week living the hospital without Wi-Fi? I’m not sure what is relevant to ask at this point. I imagine there are probably people reading this though who have had hip surgery themselves, or a child who has had major surgery, or perhaps are a doctor – any number of people read this blog who might have a good idea of the kind of questions I should be asking at this point. May is a little girl; she is only 3 1/3. Her cognitive abilities are very low. Her physical abilities are very low. How will surgery change that? I don’t know. For good – one hopes. But, perhaps for bad as well and I want to do everything I can to avoid that. What should I ask tomorrow regarding May’s surgery? *** UPDATE *** Thank you very much to everyone who gave me ideas to take in with me today. I felt far more informed. It was like a revision session with an exemplary study partner! If I received an answer that relates to your comment I will endeavor to put something below as a...

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Why I’m abandoning therapies for cuddles

Posted on Jan 4, 2013 | 10 comments

Why I’m abandoning therapies for cuddles

At some point, towards the end of 2012, I fell into a therapy funk. I stopped doing as much physio at home as I should. I stopped giving May a spoon to hold during her meals. Stopped showing her bright lights in our darkened bathroom while she took her evening bath. It wasn’t conscious. I didn’t even realize about the spoon until someone at May’s nursery asked me about it. “No,” I said, feeling a simple truth slip from my mouth. “I don’t do that anymore.” But, why? Why has this happened? I think it is the surgery. It was shock to learn that, despite everything we have done, there was nothing that really that could have been done. I am suffocating under this idea. I haven’t written as many posts because I think: what is the point any of the stuff I’ve been doing and, furthermore, of encouraging other people to do the same? It is not enough to do more. It has to work. There is a realism there that is uncomfortable for many people to deal with. May is not like all disabled children, cognitively she doesn’t understand all the enriching activities we do with her. That is also uncomfortable to accept. But, if it doesn’t work, it isn’t worth it. May deserves more than being stuck in the car and shuffled from expert to expert. She needs to be challenged. Yes. And we will continue to challenge her. But, not for the sake of it. It must work. So my New Years resolution this year is not to do more, it is to do less. To spend more time reading to May, cuddling her, tickling her, singing with her and all the things she loves. And, doing less of the things that I’m not sure benefit her and do because I feel I must. I must...

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